Yesterday my abdomen was so swollen I looked 8 months pregnant. I woke this morning and everything was spinning, I was so dizzy. Couldn't get gp appointment so partner got me to chemist fir blood pressure checked. It is raised, but by the time I got to chemist, things had settled just a little bit.
I feel unwell and my head feels foggy. I have no idea what is going on and can't get a doctor appointment until tomorrow. This is the first time this has happened to me. Any ideas please. Thanks x
Alley27, I don't have any experience of this, but if it had been me I'd have gone to A&E. I hope your doctor gets you sorted tomorrow.
Best wishes
Phyllis
Hi,
Sorry you're having such a bad time.
When you are feeling like this and you cannot get a GP appointment, the last thing you want is to go to A & E and wait amongst people who are ill and may also be carrying infections.
My advice to you is to call NHS 111. They will listen to your concerns, list your symptoms and then advise you accordingly. This can range from a conversation with a Nurse Advisor or a doctor, advice to make a non-urgent appointment with your GP, attend an out of hours centre with an appointment or in certain circumstances they can dispatch an ambulance to your home.
There is also an NHS 111 online service where you screen your own symptoms and this can take you down a similar route to the above.
digital.nhs.uk/services/nhs...
Hope this helps.
Jim
thanks for this Jim - it's Alley27 who was asking for advice. In the past she has reported extreme difficulty in getting a timely response from doctors about her ongoing, unresolved difficulties. In these circumstances, I would go to A and E. Personally, I have needed to do so twice (as advised by my consultant) on a sudden spike of temperature. I agree with all the reasons you mention for taking an alternative action, but sometimes needs must. I am sure Alley will have done the thing she needed to do anyway 
I am currently in hospital with the same symptoms.. as well as others! My GP sent me straight in yesterday as my stomach turnt out to be full of fluid and my blood pressure was through the floor!! Still waiting on the doctors this morning to let me know what's happening xx
Hi bookworm hope you feel better soon. Today my abdomen is still a little swollen I have mild headache and still not heard from my gp. I rang consultant secretary yesterday and again just now and nothing from them either. This time I have asked to speak to the consultant directly as I am concerned.
I am wondering if it's this medication because this has never happened to me in.ovet 7 years whilst on mercaptopurin. They swapped me to mycophenolate in June and I have had nothing but trouble.
Take care x
Hi guys and thank you for your help. I managed to see my gp yesterday. She examined me thoroughly. She has ordered an ultrasound which is good. However, regarding the mycophenolate, she told me that she had no ideas what to do with such medication because as a general practitioner, they cannot even prescribe it. What she did do for me, was look up side effects of mycophenolate...but she did not look at the paper we get with this medication, but on the site/pages only doctors can access.
We looked at all the information and side effects listed are, abdominal bloating, excessive and rapid weight gain, and in brackets here was the word immediately, nausea, lack of appetite, ascites, swollen face and abdomen, swollen breasts, headache.....plus a lot more. The ones I listed are the ones I struggle with on a daily basis...not good.
She is in agreement with me and believes it's the mycophenolate...because my liver function tests are normal, there is no inflammation in the liver area and we did a range of bloods a couple of weeks ago to rule out anything else, just to cover my back. We are going to do more bloods tomorrow for the same reason. She said that mycophenolate was a very strong medication and wondered why they put me on such a high dose straight away...anyway I cannot tolerate it.
I am going to try and get a response today from the consultant secretary..I have tried to get a response for the last 2 days, but nothing yet. My gp said I must keep insisting that they speak to me about this because its obvious that this medication is not suiting me.
I am going to come off this medication myself if he doesn't speak to me soon. I have an appointment on the 10th but that's still a week away. Today I have reduced the dose of mycophenolate from 2000mg per day to half that amount. I am still on prednisolone, but at 5 mg this has no real bad effect on me.
I know we should always check with the consultant before any changes are made but my gp who has supported me through everything is in agreement for my highest good.
I mean it's bad...rapid weight gain over a weekend when I hardly eat because of no appetite...I should lose weight with what mycophenolate will let me eat. I went out to dinner on Friday night. It was a function for the royal British legion couldn't eat my meal due to no appetite.
I bought a dress on Monday of last week which fit beautifully and on Friday, the day of the function I had to go buy another because the one that fit perfectly on Monday wouldn't fasten...yes its been that quick. So you can only imagine my embarrassment and my anger at this medication.
I have got to do what is best for me
Yes my liver feels normal, but I don't and that is a problem. I used to be on mercaptopurin and had nothing like this to deal with. We have enough to deal with as it is without horrendous side effects. I have no idea if this weight gain and bloating will settle down, but I have been on mycophenolate for over 3 month now and it should have settled down.
I will keep you informed and thank you again for all your help. A quick way to lose this weight would be brilliant lol.
Take care
Alley x
Hi Alley
As pilistines said above if you can’t get hold of your consultant then I think you should still go to A&E. I think NHS 111 online
is brilliant as well, as Jim says, but not so sure in your case but definitely worth a try before enduring A&E.
Good luck!
Miles
Thanks miles...I will not go to a&e unless I seriously I'll...resources are stretched enough in this area...I saw my gp who was brilliant. I am going to insist that I am switched from a gastroenterologist to a hepatolagist. I have only seen a hepatolagist once in this past 7 years and he put me on this mycophenolate, which is not suiting me. He did promise to listen and if the medication is not suiting me he would find something else.
I want to go back on my old medication at least I didn't have any of the problems I have with mycophenolate. I could function at least.
Thanks for the help x alley
Thanks for reply Ally. Have a go at 111online - worst it can say is go to doctors (I mean worst from point of you saying that was a waste of time!) and if it says do something else then it would have been worthwhile AND you will have gone through the “proper” procedure 👍.
Miles
111 on line is an option, but I did go to see my gp and as I said she was brilliant. I took my mycophenolate around 2 hours ago at half the usual dose. Usually bu now I am bloated, yes I bloat even more within half an hour. On the reduced dose this has not happened today.
I am still nauseous and no appetite but it feels a lot more comfortable x
111online takes about 5 minutes 😁👍
Hi everyone thanks for your help. My consultant secretary called me this afternoon but it took 4 calls from me and insisting to speak to consultant. He was on study leave and could possibly be back tomorrow.
She asked me what exactly was going on, so I told her everything. She said that I really shouldn't stop or change any medication until I see consultant on 10th...I replied ok then you try living in this body that I now have to put up with thanks to this medication.
I have persevered with the new meds for over 3 months now and that should be enough time for this medication to settle down.
Anyway I am still only taking half the dose until I see him o 10th. My gp has arranged an ultrasound to check just how much ascites I have but wants me on antibiotics just in case of infection..
I just have had enough
I did not ask for this bor do I deserve it none of us do xx
Well good luck for the 10th Ally 👍. Hope you get this bottomed out once and for all. Well the medication side of it at least initially and then the actual issue following that!
Miles
Hi Alley
I've just read your message and everyones replies which I'm not in a position to comment on medically.
However there's nothing stopping me saying you hang on in there, and well done on you getting that other dress which must have been a tough decision to make 😁
I have a friend who's been seriously very ill for years and has been on life support 6 times, one of those times for 6 months. Yesterday she informed me that recently she'd reduced one of her meds by half as it made her feel awful. When she saw her consultant a few weeks later they said she looked really well and her bloods had improved ...lol! She then informed her consultant who was a little shocked at what she'd done, but then agreed that she could carry on with the reduced meds as they were working for her .
I'm not saying what she did was right but her words to me yesterday was listen to what your bodies telling you as where all different ! Me I'm allergic to loads of meds so I really feel for you right now if our meds are knocking you about !
My fingers are crossed that all your medical problems are sorted soon and all goes well with your ultrasound and appointment on the 10th .
Take care Alley
Love Trish x
Thank you for your reply.....I received a letter this morning and my ultrasound is arranged for the 11th, the day after I see my consultant.
I lowered the medication dose by half, and have taken that amount for a few days. My abdomen is going down, my head feels much better and today the nausea is improved a little.
I managed to speak with consultant secretary, and I have explained what I have done and why, she just said don't stop the medication fully until I see the consultant next week. I have agreed to do as she asked, normally I would do what I know is best for me.
What has peeved me off most is the fact that I have had to give my job up.
But at 55, with the extra stress these diseases have on our bodies, I have no choice. I plan to do more for my branch of the British Legion, so I won't be bored lol.
I feel better in myself today and I hardly never feel this much better...I have lots of ups and downs.
It just came to the point where my body was screaming slow down...so I have listened this time.
Your friend is right when she told you listen to your body.
Take care.
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